Stop Googling? Wish I could...

So what happens after you leave the OB's office with a prenatal diagnositic of your unborn baby? You turn to google. I remember it well.

"large right atrium"

It was the first thing the Dr said. Baby LJ was not in great placement for further evaluation so we would have to return. But we were sent way with the note that his right atrium is enlarged. They didn't say what it could mean and off we went. It didn't really hurt so bad because the Dr said he couldn't tell why or if it really meant anything at all. We went home. I googled. What did I find? Nothing conclusive. Everything from "nothing at all" to "still birth." Two weeks later the first real diagnosis was made....Ebstein's Anomoly. I couldn't even remember what they called it. I was a bit more in shock. "It's real....It's there." I do remember those words. I go home and call my regular OB where they tell me that it is Ebstein's and that they want me to go in later for a birth plan as my hometown was not equipped to deal with heart conditions.

I turned to google....and cried. I read over and over.... "the younger the person is when diagnosed...the worse off they are....with prenatal diagnosis being severe." "low chances of surviving birth or the first year." "lifetime of surgeries." "increase chance of stillbirth.." It was hard...but I kept reading. I was told to "STOP GOOGLING!!!" but I couldn't help it. I felt like I needed to know every last thing there was to know about it. I felt like the Dr's were being a bit too vague. How could they not give me exactly how this will go for me and my baby??

LJ was born. He did survive. He did have surgeries and a few complications (added diagnosis of pulmonary stenosis) but for some reason I stopped googling after he was born. Somehow, all the negative outcomes faded. He was all I needed to know that we were OK.

I admit it. I "googled" last week. I googled ebstien's. Why? Not sure. There it was. All the negative outlooks. It was scary. I cried. I cried a lot. The research was sitting in front me of and I couln't push it back in my mind. Was it good for me to remember all of this? Did I need this to really grasp all he has been through and what a miracle he is to me? Maybe. All I know is that it might be awhile before I google again but I am sure it will happen again.

My advice: You can tell someone to stop google, but they won't. For some reason they need to. I dont know if it is a gain of control or a grasp of reality when you feel like everything around you crumbling....but it will happen. Just make sure it is educated googling.

Couponing

So to get off the heavy stuff. Let's chat about saving money and couponing. I love coupons...I really do. IF they are for what I want/need. I get a big thrill out of seeing the money I save when I use them. Even if I only save $2 a week, that is over $100 a year! But I have a beef with coupons and those who use them. I have seen those who extreme coupon! You know...the people who get $300 worth of groceries for like $10 (ok, a bit over exaggerated, but not much). But here is my question....

How much of that do you need and use? How much of that did you buy because it was a good deal? How much of it was neccessary? How much of that will just sit in your house and ever get used? How much of that food do you actually want your family eating??

Can you see where I am going with this? I was reading up on someone who coupons...bragging about the stash she has of everything in her house. And we are talking like more than 10 of one particular item! She then went on to say that she had to eventually put some of it in a garage sale and something tells me that she didn't get her money back. Do you need 10 bottles of shampoo in your house? Is the shelf life long enough that you can keep it like that?

I see that a lot of my consumer goods coupons are for candles, air fresheners, etc. I have do have air fresheners in the bathroom. It is obviously there will be a point that it will smell. We have had the same can in the bathroom for well over 6 months. At that rate it would take me over 5 years to use 10 bottles!! NO THANKS!

I think the hardest problem I have is with food. Everyone wants to save money on food. But there is also a compromise of the nutrition. I see an overwhelming amount of coupons and sales for pizza, breaded/fried items, etc. Things that I really try to limit in my house. I am not perfect. YOu will find brownies here from time to time. We have chips. We do eat pizza. But not at the rate one would have to eat to dramatically lower my shopping bill at the end of the day.

So I guess what I am trying to say is that I have a hard time saving extreme amounts of money due to the restrictions above. I really have one or two stock of the things I use all the time. I make sure coupons of things that I definitely use (diapers, peanut butter, granola bars, laundry detergent, etc) never expire if I don't have a few back ups. I tend to toss coupons of things that I dont' really care for in my house. If I want chips, I will pay full price (or the store sale price) because that is the price I pay for bringing something unhealthy in my house (and we do get chips). I buy genertic where i have tested and found to be no difference. I buy meat in bulk, divide and freeze, free overstock of anything I can, double up manufactor's coupons with store coupons, etc.

That being said, I saved 41% on my last grocery store purchase :)

He doesn't look sick

If you really wanted to make my blood boil and tears come to my eyes between the dates of April 3, 2009 (LJ's bday) or about Feb 2010, you would have said the title of this post. I heard this alot after LJ left the hospital. By all accounts, if you looked at him, you would have no idea he was sick. He was 1 oz shy of 8 lbs when he was born a month early. He has big bright blue eyes and just really handsome (see below).

I always thought "that is a terrible thing to say...he is sick...he is pretty darn sick at that!!" It made me angry. I am not sure if it is because I felt they didn't grasp the intensity of his defects or if it just a constant reminder that he is sick. It was (and still is hard) to explain Landon's condition enough where the intensity was understood. Many are under the assumption that Landon will be or is fixed. That he is fine now that he had surgery. "Boy, it sure was scary when Landon was going through all of that...I am glad that is behind him now." Ouch. Again, it hurts, because he will never be "fixed." There is nothing that a Dr can make his heart better to the point where we will never have to worry ever again. Everday will be a contact check within my mind. How does he look? Anything blue? How is he breathing? Is it faster than normal? Wonder what his oxygen levels are? He will constantly be monitored and checked. Sometimes days will go by , sometimes weeks, before I will be reminded that he is more fragile than he will ever look.

Things have changed a bit since Feb 2010. The phrase "he doesn't look sick" doesn't quite anger me as much. I feel kind of happy about it because he DOES look great. He IS doing well right now and it is great to see. But it still stings. Only because it brings my head out of the clouds....I will alway say to myself "but he IS sick...he always will be."

I have an entire other post (maybe more) on the many things people have said that really aren't as nice...you would be suprised the comments that arise when you are due with/or have a sick child.

I just want to blurt it out!

Kaitlyn has been in some form of gymnastics since she was about 21 months old...the same age Landon is now. She loves it and I like that it helps build her gross motor skills. I want the same for Landon. I am going to sign him up at The Little Gym. I am excited to do this with him but I worry. Why? Let me tell you.

Heart babies can fall behind in gross/fine motor and speech. They spend a good deal of their life recovering...from catherizations of the heart, from surgery, from illnesses that hit them harder due to a weakended state, etc. They are just behind and I am totally OK with it. I am overjoyed at every small milestone he hits due to the same reason he is hitting them late. The fact that he is here with us on this Earth and hitting milestones, whenever it is that he hits them, is a miracle unto itself and I cherish them all. HOWEVER, it is hard when LJ is around a bunch of kids his age and the difference really shows. LJ doesn't care in the least. He is thrilled. BUT it bothers me. It shouldn't but it does. I feel the parents noticing his lack in skills. I feel them evaluating me as a parent. "I bet that kid sits in front of a TV all day." " I bet she works so much she barely takes time with her kids." Irrational? TOTALLY! Can I stop it? No. I want to rip off his shirt, show off his scar and show them all exactly everything he has been through. I want to share that he has been through more than people go through an entire lifetime and he isn't even two. I don't want the sympathy but I feel like I need to explain his past to everyone so that I don't feel judged. I also want them all to know so that they feel as proud of him as I do. That he now says "momma" feels a million times better than it would have had he not been through all he has. It's my own complex.

I will sign him up. I will take him. I won't rip his shirt off. I am sure it might come up eventually in small talk with other parents since it is a parent/tot class but I will sit back and try to enjoy the fact that my son is HERE. And not only here, but not in a hospital right now. Not hooked up to machines, not getting echos, not getting poked. He is HERE and enjoying running around like a toddler who has drank an entire can of Mountain Dew (no, he does not get soda or nor caffeine, this kid doesn't need artifical energy).

Yep, that's all.

What will be here?

So I struggle with what I will write about here....well more along the lines of which way will this blog go? Should I allow friends and family to know about it? In that respect I would feel inclined to write about what we do as a family, post pics of the kids, talk about the small ups and downs our family is going through on a daily basis. Could I really write how I feel? I would worry about hurting feelings, or sharing too much, or showing how hard somethings have hit me going through life. It is hard for me to let those who are closest to me know about struggles and things that bug me. What if they did one of the things that bugged me? I don't like hurting feelings. Should I blog about the fun craft things I do? I do love doing crafty things! Should I blog about the thrill I get out of couponing and finding good sales?? Do I blog about how hard it is being a mom to a heart baby? Do I blog about how hard it is to see friends losing their heart babies all too soon?

So I am torn what I should do. For now I will write. I don't quite know when I will let it be known that this blog exists. So if you are looking for what will actually be written here, I HAVE NO IDEA YET!

Here we go!

So it seriously has been incredibly too long since I have posted. There are many physical and emotional reasons for this and I am sure as I write more, they will come out. It is obviously too much for one post, or even several. But I did promise myself that I would start this blog back up and running. I will hit major highlights.

LJ did have his open heart surgery on August 5, 2009. He did great. We were out of the hospital within a week and besides some pain managment issues, everything was fine. We had a check up a week or so after and the another in Feb of 2010. The bad news is that the surgery was not as successful as they had hoped it would be. They did a corrective surgery where they cut away the restrictive part of LJ's pulmonary valve and replaced it with a flap. The valve went from being too restrictive to being too loose. LJ's heart is now regurgitating (being blood back into the heart) through the pulmonary and tricuspid valve. He cannot sustain this forever. His cardiologist said there will come a time when he will just get really sick and they will fix it then. *sigh* Nice. LJ ended up with tubes (for his ears) at the end of January. The end of March brought a 5 day hospital stay brought on by a bacterial infection that he couldn't kick. Since then he has been doing great. We have had early intervention for his speech and that is really picking up . He is walking, talking and just all around handsome.

Kaitlyn has grown so much in the past year. Her vacabulary is enough to blow my mind. She is smart as a whip knowing her letters by site and their sounds. She can count to infinity (or so it seems), she knows her shapes, colors, animals, etc. She is now learning addition and all before she has even turned four. She is a sponge who asks to do homework in her free time. I indulge her since it is her request. She has started gymnastics at a real gymnastics gym and is loving it. She is making lots of friends and has started going to birthday parties, which she LOVES!

Myself? Well I finally graduated! In between Dr appointments, surgeries, hospital stays, illnesses, I somehow managed to graduate. I started working at the US Army Corps of Engineers here in Champaign as a post doc and hopefully will be brought to the federal level soon.

Jim? Well he has moved to the day shift! PRAISE THE LORD! Shortly after graduating, Jim was able to move to a position at the local hospital surgery center and works the day shift now. Life is finally back on track and we have a normal family dynamic that I will never take for granted again.

We moved! Yes, we bought a house here in town! A nice two story (though I wish it were a ranch) in a great subdivision full of kids. We love the space (1990 sq ft with 990 ft of basement) and the fenced in yard! We have slowly started filling it. Kaitlyn has a new bedroom set that she boasts about to everyone. We have a new bedroom set with a king sized bed! No more fighting for space! We bought a new camper and plan on many camping trips this year. Oh and right after Thanksgiving our Saturn met it's demise as Jim was struck (everyone is OK). So we now have a 2010 Pontiac G6. Until we bought it, I had no idea there was a song about it. Now everyone hums it when I tell them what we bought.

So there you have it. This is the start. There will be more to come but I wanted to hit the high lights.

Schedule of Events

I am sorry it has taken so long to update. Things have been a whirlwind since Landon's appointment on Monday. His echo showed no improvement and, therefore, surgery is needed to replace his pulmonary valve. Shortly after the appointment, probably due to stress, I became a bit ill. Thank goodness my mom was around to take care of the kids so I could rest up for the rest of the day, that night, and the following day.

Of course, one can't help but think of all the scary things that go along with open heart surgery. It is just frightening to think of my 4 month old son having to go through so much. However, after I started feeling better, I started planning for the event. Buying outfits for him to wear at the hospital that would allow access to his chest but still keep him warm, new socks, finding care for kaitlyn while we are at the hospital, etc.

I was able to talk to a wonderful nurse about the whole procedure. This isn't going to be a permanent fix. The valve will have to be replaced as Landon grows. No one is sure how long Landon will have between surgeries but she said to count on years instead of weeks. Even after Landon stops growing, there is a chance of it having to be replaced since the valve can calcify (harden) and need to be replaced. Depending on what size they need for Landon, the replacement (for now) will either be bovine (cow), pig or human. After he stops growing he could possibly get an artifical valve.

Landon is set for surgey on August 5th (this coming Wednesday). He is the first case of the day so he should be in the operating room around 7:30 or 8:00 am. I was told to expect 4-5 hours for surgery where the first hour is getting him all set up and the last hour slowly taking him off the bypass machine. His heart does not need to be stopped for the surgery ( I didn't even think of that until the nurse mentioned it). Landon will be in the cardiac ICU for 2-3 days before being moved to the progressive care unit where he will be for another 3-4 days. So it looks like, if all goes well, about a week stay in the hospital.

To top it off, Landon had an urology appointment this past week. He has what is called a hydrocele (fluid around his testicle). Usually it goes away on its own but Dr said that it is commuting ( I dont' know what this means, I should of asked) so will most likely need corrective surgery. Not as big of a deal, it is same day surgery.

Phew. There is the update. I promise to have constant updates the day of the surgery as we are updated on Landon's progress. And, of course, we never would turn down a prayer for our litle man :)

And now, some pictures